Silver Linings

Do silver linings exist with this disease?  My life is so radically different now than it was last year.  I could not have imagined the changes that would take place. 

I find myself grieving for some parts of what I lost though.  The reliably healthy, strong body capable of mountain biking, trail running, and half marathons.  A strong core and balance to reliably work my horses with.  The possibility of a future unclouded by any hint of disease. 

Now I have a future that looms dark with the always present specter of Lyme.  Small joys do exist, but last night I found myself unable to grapple with the reality that I may be coping with this my whole life.  In the past week or so I have allowed myself to understand that I do not want to risk a pregnancy, for the chance of passing this onto my child.  That in itself is a very unsettling, sorrowful decision, as I always thought I would have a child.  But...I have always wanted to adopt an older child, so I think in one way, this is life/God/whatever saying yes, that is what you will need to do.  I really love playing with (I'll admit it, mothering!) my bf's wild and unruly niece....so this may be the best route for me anyway.  Still shitty to admit it though.

Anyway, some thoughts for this new year...I am not really a fan of new year's resolutions because they seem to be broken very easily.  I like to set goals.  For instance, last year's was get better.  While I am by no means better, I am definitely better than I was last year.  So this year, I think my goals should be to pass my medical school classes and ride.  I would love to say complete my first formal horse trial or something cool like that, but I have no idea what I feel like from day to day.  For instance, I took five pills on two pickles and have been nauseated ever since. 

However, the niece is a fabulous natural rider and is really pushing me all the time to ride.  I would love to take her to some shows this year, maybe just a couple of hunter paces and a few schooling dressage shows.  That would be a nice goal to aspire to as well. 

Now I have to focus on the rough 6 hours of Monday (aka my domination of biochem and nutrition...cough cough, positivity!!!).  I am dreaming in acetoacetates and triglycerides.

Long Days

I think I am ready for school to begin again.   I have slept, had weird nightmares, and taken my pills like a good Lyme patient.  Time for something else. 

alyson1derland: Burst of Energy

Today, I got a huge burst of energy and actually managed to get a few things done around the house! It felt so, so good. That is, until Lyme reared it's ugly head and rendered me 100% useless for the next three hours. Oh well....It was good while it lasted!

Lyme Beast: Cold

This is some insane weather.  With the windchill, the talking heads on TV are saying that it is about -10 to -15.  I live on a mountain, so take 10 off of that.  Most of the time I am ok with cold, as long I am bundled up enough.  Today...today was a different story.  It took a pair of heavy weight winter running tights under my jeans, two UnderArmour fleeces and a heavy sweatshirt under my ski jacket and a hat and mittens.

The last two stall gates were hung last night and all the girls were tucked in due to the extreme cold.  On inspection, I found myself wondering WHY I have all bays (and only one gray...).  Is it really THAT much easier to find a good bay horse?  Yes, the color should be the last thing you look at, but I think I have literally every shade of bay possible and then some.  It is getting rather obnoxious...

Everyone was pleased to be in out of the wind.  I try to keep my girls out as much as possible, as I believe that horses absolutely do better if allowed to move around as much as they please.  However, when the smart baby horse keeps opening the gate and allowing everyone into the barn, you have to give in.  :)

I've got my last major unreal biochem exam on Friday.  I think it is 81 questions.  It is combined with a nutrition exam (80 questions).  I am on the last spiel of work to get organized...but man.  I am waffling back and forth between a well of depression and a frozen inability to do anything.  Thinking is difficult.  My brain feels mired in sludge or slime or icy or goo...you get the idea. 

Tonight. Tomorrow.  Thursday.  Then exam day.  After that, it is sleeping and quilting and fussing over sleepy ponies.  Who cares about Christmas?  I just want to have some time with my bf and my favorite ladies.

Lyme Beast: You Know You Have Lyme Disease When...

You know you have Lyme Disease when...
1. You are hungry, and you suddenly realize that NOW you can get down all those supplements you couldn't force down fifteen minutes ago.
2. Your medicine cabinet has turned into half of a dresser.
3. The antibiotics you use could keep the local town safe for a year in the event of a disaster.
4. In 30 seconds, you can think of at least 5 ways to get pills down.
5. Your pharmacy bill is higher than your mortgage.
6. The weekly grocery bill for your food is less than that of your dog's food.
7. You suddenly realize that holy shit, you actually look good in a string bikini because you have FINALLY lost those last 5 pounds!  Too bad you don't feel well enough to go anywhere in it...
8. To keep track of your car in parking lots, you always park in the same place.  And you always forget where that place is.
9. Your daily pill regimen involves more time periods than the most nurses' shifts.
10. You can drink two pots of coffee and still go to sleep in five minutes or less.

alyson1derland: Love Letter to my Digestive Tract

With clunking sounds of the plumber coming from upstairs, my fingers are crossed that he can fix our toilet, which is suspected to be jammed with a plastic Lincoln Log window, in time for my big day tomorrow: I'm starting Doxycycline.

Dear Stomach,

Please cooperate until the toilet is fixed.

Love,

alyson1derland

Lyme Beast: One Day. And then another.

So I survived the last round of exams.  Passed my histology class.  All I need to do for biochem is to just pass the next exam.  That is it.

So why am I so annoyed?  I have an OPP practical today at 4:55.  That isn't really it.  I think it is straight burnout.  I'm tired of pushing myself this hard all the time.  I had the realization the other night that I am probably prolonging my disease by doing this now.  The flip side of the coin is that without going to school, I would not be able to afford my medication to get better. 

So I don't want to memorize all these eensy weensy pathways.  Or work on nutrition, welcome respite that it is.  I want to sleep and feed my ponies and let my spoiled pet chicken out to run around the house and get into stuff on the counter. 

Luckily, I have a two week break coming up.  My last set of major exams is the 17th, and if I can just hang on until then I will have some time to rest.  The good news is that 1/2 of the shittiest year is almost over.  I will have a lot to be thankful for at Christmas lol.

alyson1derland: Life is Good

What could be better than waking up pain free after a restful night of sleep, with the sun shining in?

The promise of pumpkin pie!! This is going to be a very good day!

Lyme Beast: Something Has Got to Give

I make beautiful, fabulous notes for class.  However, becaues of how utterly exhausted I am after an exam (and how so effing convenient that my exams are lining up with Herx reactions!!) I generally only get them completely wrapped up to my satisfaction about 15 hours or so before the exam.  That pisses me off to no end. 

These kinds of notes should get me an effing A.  Instead, I'm C/B territory because I'm juggling coming out of a craptastic weekend with having to test for two days straight. 

I slept almost 18 hours straight on Saturday.  From 2 am to 10 pm.  That is ridiculous. 

I have to start being more aggressive about getting my work done early.  So that I can spend the weekend before the test lying in bed and not worrying about if I am going to pass or not.  Jeez. 

Lyme Beast: Sleepy, Sleepy

So I have two major days of testing next week over 5 subjects.  And I'm going to kick the snot out of it and sleep afterwards. 

BUT.

All week long I have really been pushing myself, working on stuff ALL the time.  It caught up to me yesterday around 2 am.  I started not being able to type properly.  Misreading.  And it just got worse. 

So I went to sleep, thinking I would wake up in a few hours.  Haha.  I slept from 2 am until 10 pm.  I woke up for going to the bathroom, eating a bit, and feeding the ponies.  Otherwise it was a total crash.

While I feel a little annoyed (well...ALOT!!!!) that I missed some studying time, I still have to respect the fact that I have been pushing like a mofo.  I mean, seriously, I would rather have this kind of sleeping crash happen on a Saturday than on Monday or Tuesday.  Now that I have like 17 hours of sleep under my belt I am feeling like going back at it. 

I am also daydreaming about sleeping from Tuesday night to Saturday.  :) 

alyson1derland: Sigh

Longing for the time when my days aren't all described with the word intense...

Lyme Beast: When One Day is Too Much

I have recently learned when one day is too much.  When one day of pushing yourself makes you fall in bed for two days.  When trying to act normal turns out to be a royal 'effin fail. 

I have to keep in mind that I am sick.  I don't look sick.  Somedays I don't feel as bad as I did before.  But it is on those days--those days when for an hour or three I think I could do so many more things--that I really need to be careful.  Because those dreamed of tasks demand a very high price. 

I have to focus on improving slowly and carefully.  Like bringing a favorite horse back from an injury, it is ok to be patient.  It is ok to have to wait.  It is ok to realize yeah, I need to sleep all day on Saturdays to compensate for the stress of school. 

But while I am lying in bed, I am practicing riding.  I am perfecting my transitions, envisioning them fluid and soft and so effortlessly straight.  I am finding expressive medium gaits in my mares, and springing from a beautiful collected trot into flowing, elegant extensions.  I practice half passes while I walk to class.  In my car, I am developing the tempo in movements, and visualizing a sweeping, lofty gallop that carries us over fences as if we had wings. 

Now, I am quiet.  My legs hurt.  I am tired after walking around feeding my horses.  The detail oriented perfectionist is hidden away, as I forget my jackets and hats in and around the stalls, the turnout sheets over the gates, and the various stirring implements for the grain in odd places.  But I am capable of getting up--of feeding the girls, of preparing their grain and hay and water.  Of cleaning one stall regularly.  That is an improvement. 

It is a far cry from dancing through the dressage portion of a recognized event, or floating over the cross country portion on my eventing-bred Trakehner (who injured herself in the pasture like the total diva she is).  It is not the slow build up of lungs and bone and sinew that is necessary for such things.  But it is an improvement from the vertigo, from the nausea and shaking of hands and legs and fingers that has detailed my life. 

Life will continue to improve.  And I will continue riding every day, in my mind, practicing all the things I would be doing if Lymes would let me.

When I am healthy again...

When I am healthy again...
I will go caving with my brother.
I will go hiking/camping.
I will own my own horse again.
I will do photo shoots.
I will go to Massage Therapy School, so I can help others who are hurting.

But while I am waiting....
I will keep blogging.
I will continue to perfect the Too Late To Turn Back Pineapple Chili recipe with my friend.
I will edit my jillions of photos on my computer.
I will continue to learn the names of the muscles, etc. that are hurting at any given moment (soleus, iliotibial band, gastrocnemius...).
I will hug the horses at the barn, knowing that someday soon my special pony will be there waiting for me and I will be well enough to take care of him.
I will spread awareness for Lyme Disease.
I will enjoy Skype dates with my friends.
I will not give up!

alyson1derland: New CDC Guidelines

The CDC recently changed their guidelines for diagnosing Lyme Disease. You must now have at LEAST 10 out of 12 of the following symptoms:

-you can identify all of the people on the Urgent Care billboard

-when you lose an item (book, shoe, etc.), the first place you look for it is in the fridge (and chances are good that it's there!)

-you attempt to drink your child's watercolor paint water because it looks exactly like one of your homeopathic remedies

-an epsom salt bath means the perfect opportunity for you to catch up on bills, texts, emails, writing your life story, etc.

-you eat more food than a teenage boy and a pregnant woman combined, and still have the physique of an Olsen twin

-you can call your doctor's office and leave the message, "Hey it's me; Call me back," and they do

-you take more pills a day than all of your grandparents combined

-you spend so much time in your bed that you've created a dent shaped exactly like you

-you get really excited when you break your personal record for giving the most vials of blood at your doctor's office

-you have a stockpile of household items next to your bed that you use daily for self-massage (and you NEVER leave your house without your wooden egg or miniature rolling pin!)

-you have way more experience doling out your medicine than a pharmacist

-your weight and your body temperature are easy to remember, because they are the same

alyson1derland: Herxing

Oh, those crazy spirochetes (the little spiral shaped organisms in the picture responsible for causing Lyme Disease)! They always want to have the last word. When you begin your attack on them with antibiotics and they begin dying off, they don't just die silently. Oh, no! They want to go out with a bang! So they release a toxin into your body that makes you sicker than you ever thought possible. This is called a Herxheimer reaction, or a Herx. Welcome, my friend, to hell on earth!

My doctor recently gave me the green light to start back up on Azithromycin. I never thought I would jump for joy at the thought of taking antibiotics again, but I am so happy to be back in treatment again! I felt so good on this medicine, and I'm very hopeful it will help me get back on my feet again. But with this good news comes the reality that Herxing makes me want to spin a cocoon around myself and not come out for a very long time.

Herxing typically lasts anywhere from a few days to a few weeks, while your body works extra hard to get rid of the sudden surge of toxins. My job is to help my body by doing everything under the sun to help flush out all of the extra toxins. I drink water with lemon in it. I take epsom salt and clove oil baths. I have a mini trampoline which I bounce on (VERY, very lightly), which helps the lymphatic system. I drink down homeopathic remedies and various other concoctions. I get weekly massages.

Since, unfortunately, I can't actually spin a cocoon around myself, I do what I now do best: burrow deep into my covers in the Alyson-shaped dent I've created in my bed, and wait for the Herx to end so that I can, hopefully, get some much needed relief from this medicine.

alyson1derland: Failure to Thrive

Failure to thrive. Those three words have come back to haunt me once again. For almost a year, my youngest child was labeled failure to thrive. There are no words to describe how helpless I felt, watching my baby's growth flat line month after month. While all of the doctors agreed with the failure to thrive diagnosis, none could ever find a cause for it. When I got my Lyme diagnosis a few months ago, we finally put two and two together and tested him for Lyme Disease. He tested positive.

But this post is not about him. He is no longer failure to thrive. This time it is me.

When my doctor told me yesterday that I was failure to thrive, I felt like all of the air was being sucked right out of me. Yet it couldn't be more true. I'm down to 101 lbs, my hair is falling out by the handful, I'm housebound, and every time I so much as blink, I have to run for the bathroom. But hearing it put into words is a whole new ball game. Now it feels, well, real.

I want to get better. I want to thrive again. But I want it NOW! I'm tired of being patient. I won't sugar coat it; today is a tough day. It looks like my optimism is failing to thrive, too. I guess I need to go back and read my previous post: http://lymebeast.blogspot.com/2010/11/caught-in-rip-current.html

Lyme Beast: Argh

That is an accurate description of the last 24 hours.  I wandered off to lab yesterday, and came home fully expecting to get some work done.  Lo and behold, literally within a half hour or so of taking my medication I was nauseated.  I ended up yakking in the sink (closest thing!!) twice. 

After the second yak attack, I partook of the Miracle Gummy Bear Cure.  This involves slowly nibbling on a gummy bear while thinking calming thoughts to your stomach!  :) It worked, but my night of studying was gone.

I had a slow start this morning as I had some residual nausea.  I only attend required classes and was grateful that I didn't have to be anywhere today beyond my study room. 

I got some work done today, but now I'm going to rest for a bit.  It is 4:30, my normal low energy time.  I do have to admit that it is nice to be able to choose to nap at this time instead of going OMG I AM GOING TO FALL ON MY FACE UNLESS I LIE DOWN AND SLEEEEEEP!! Improvements...I will take them, however small!

In other news, my old horse is mysteriosly ill with a very large inflamed lymph node by her right jowl.  She went off her food and I am coaxing her into eating softened food with antibiotics by shredding nearly a pound of carrots in the blender per feeding.  That is a lot of carrots.  I think my blender will be permanently orange after this is done!!

alyson1derland: Caught in a Rip Current

Having Lyme Disease is like being caught in a rip current. I can see the shore; I can see my friends and family standing there waving to me, but no matter how hard I try to swim back to them, back to my old life, I'm just treading water.

In order to make it out of this rip current, my Lyme Disease, I have to be willing to swim parallel to the shore, not toward it. It doesn't seem logical. I can see my old life right in front of my eyes, and I want to swim as fast as I can straight toward it, but it is like a mirage. The more I grasp for a life I cannot have right now, the more it disappears. Peace and acceptance are hard to come by, but I am slowly learning their ways.

In order to have the things I want most in my life right now, I have to give them up. Not forever, but for now, because my body simply needs rest.

It seems odd that being static can make you grow the most. Like a person thrashing to get out of a rip current, my instinct is to run straight back to where I was before I got sick. I want to be the person I used to be, and do the things I used to do again. But I can't. I can't run toward that, because I am on a different journey. Physically, I am weaker than I have ever been in my life. Mentally, I am stronger than I've ever been in my life. So, I'm learning to stop thrashing and step out of the way so my body can do its job.

Lyme Beast: The Diagnosis In Numbers

Lyme By Numbers:

1. Woke up one day with hands and feet swollen to the point where I could barely walk. Excruciating pain, to the point of crying when I had to stand. 

2. Visited some GPs, and requested a battery of tests, including Lymes.  Lymes was negative.

3. Diagnosed with RA, and put on a high regimen of steroids as it was the only thing capable of relieving the swelling and making me able to walk again.  I was unable to run, ride my horse, or think.  I had the summer to go before medical school started.

4. Referred to a rheumatologist.  He ran me for everything under the sun.  At one point I recall giving up 14 tubes of blood for tests.  He considered lupus, but decided on RA, despite no family history, no previous occurence, etc.

5. Given sulfasalazine and steroids.  Sulfasalazine made my hair fall out.  Steroids made my face swell until I did not recognize the face in the mirror.

6. School was torture.  I still couldn't walk without pain, and crossing two parking lots to my seat in the back of the class was a twice daily torture I dreaded.  I was often a few minutes late for class, because it often took me twice as long to walk to my seat from my car. 
          *Note: I somehow finished the capstone paper for my second bacclaureate degree during the summer. I have no recollection of it, other than a bunch of documents on my old laptop and some vague ideas of going to the library and some embarrassment that I was always not on top of stuff.*

7. I couldn't think, or sleep, or study.  Words did not make sense.  I could read a lecture, and then the next day it was as if I had never seen the material before.  It was frightening, but I shoved the thoughts under the mattress and kept doggedly going to class.

8. My husband left, my bank account was drained, and I physically could not endure any more. I began to fast, as the lightheadedness afforded me some respite from pain and I could not afford to buy food. 

9. The day after Thanksgiving, my super hero mother swept in and took charge.  She is a lioness of a woman: here was her star of a daughter, reduced to a skeleton, not eating, somehow managing to drag herself out to feed the animals and go to class.  I remember that she said when she came, I just slept.  And slept.  And slept.  I don't remember. 

10.  Somehow my Lion of a Mother managed to pay the bills, improve my health, and keep herself going.  I still don't know how she did it, and am (and will always be) impressed and grateful. 

11. M. came into the picture, and encouraged me every day to get better.  He took over the huge task of managing my every day improvement through daily sleeps, paresthesias, doctor appointments, medication-induced illness, etc. He is the man. 

12. Today, I currently have a B in histology and a very good C in biochemistry.  I failed anatomy with flying colors, which I attribute to being on Biaxin/Planaquil and not having testing accomodations.  The results of that class pushed me to be brave enough to go on Bicillin LA IM, which at 1.2 million units a shot 3x a week is like using a machine gun instead of nerf balls to kill the lyme bugs.  (That beast hits the blood brain barrier, which is where a major load of my bugs were as I had neuro symptoms.)

A former English and science double major in college, I now have the writing skills of a fifth grader.  My tenses and word choices are often skewed, and I have to use spell check all. the. time.  Keep in mind, I was a person that could sit down and produce a very good 10 page paper in a few hours, which was often gramatically perfect and needed only a revision or two in terms of translation from science terms into more accessible verbiage.

My ability to learn has completely changed.  While previously I was a very visual learner, getting most of my material from reading, now I have to rely on my kinesthetic skills a LOT.  I have to go through the material and break it down into tiny pieces.  I transform the tiny pieces into questions in a table.  I have to change the format of the table to alternating color bars as I have trouble reading long blocks of sentences and certain types of fonts.  Then by the time I have painstakingly gone through each lecture and created 10 pages of questions I can go back and carefully read and re-read, developing associations for each concept.  

I look at my classmates and wonder what it would be like to be able to think again, to have real confidence in knowing what you know.  I lost that through this disease, and fear having to press for testing accomodations for years to compensate for my slower thought processing and thinking. 

The bottom line:

• Recovery is possible.
• I like my life now much better than before--I am not the servant of someone else, and I have a much better and stronger relationship with my family and my new boyfriend than before.
• I really appreciate being able to do a few things, and having days without pain.
• I dream of riding my horses at the level I did before, and am slowly closing in the care gaps that were created by my illness (for example, their feet were trimmed erratically during last year and need consistent touch ups to improve).  I did a little bit of riding this last summer, which was disappointing due to my physical weakness and inability to really do anything (for instance, I almost fainted while cantering my schoolmaster in a w/t/c class!!!).  Getting on a horse now I'm still not as strong as I was before, but can think of actually riding a bit instead of falling off due to pain or lightheadedness.
• I have a lot of confidence in my physical ability to overcome adversity.  Events that would have rattled me to the core before my illness now just make me shrug and move on.   

Lyme Beast: A Year in Review

The time is drawing close to when I took medical leave from school last year. 
Last year, my husband walked out.
I had acquired the ridiculous flu of the moment, and remember being curled under layers of blankets, shaking with chills, and listening to him complain about how the house was messy, the dishes were dirty, and there was nothing to eat.
As you can probably easily tell, I am so better off now.  :)

At the end of November, my bank funds were drained and I had to rely on my family (specifically, my fabulous mom) for help.  It took the combined financial help of my parents and my boyfriend to finagle enough money to pay the bills, feed the horses, and buy my medications.

Lymes is an expensive disease.  It requires a lot of money to buy the antibiotics that are effective in treating it, as most insurance companies turn up their noses at paying for the cost of such strange medications.  It takes a lot of money to keep a house going when a person gets ill, especially if they had been the main (or only) breadwinner.  It takes a lot out of the support system of that ill person to watch them battle this unending disease, as some days they would get a fleeting glimpse of that person pre-illness, and then suddenly it was back to being bed ridden 24/7. 

I had a seizure. 

After that, the unanimous decision was made to start oral doxycycline even though my test results were still a few weeks away.  I was bed ridden, and slept almost 20 out of 24 hours.  I woke up to see my friend M., who would come over, bundle me up in his truck, and let me drive while he shoveled silage to his cows.  I thought it would be cute to shovel the first day, ignoring the tremors in my legs and the vertigo that made my world appear a crazed fun house.  I ended up on my butt in the soft chopped corn, looking at the wide eyes of the cows around me. 

But without the unending, ferocious help of my mother, I would not have recovered. 
She paid bills.
She forced medications down my uncooperative self. 
She took me to doctor appointments.
She fed my pets in the worst winter of the decade. 
In short, she is awesome. 

While I was a rather unpleasant patient, growling at her all the time, looking back I know she was the key to my improvement.  Although I probably could have been the poster child for Lyme Rage, she still put up with me.  :)

The other consistent factor in my life was and is my supportative boyfriend M.  My marriage, in a word, sucked as I was the caretaker of a very spoiled, indulged man-child.  I honestly don't know how I dealt with that for so long, but think that it was probably due to my single minded dedication to getting into medical school.  Dealing with a sick wife in medical school and animals and this strange half built house was more than that city boy was capable of, and I have benefitted so much because of that.  While at the time it hurt unbelievably, I would not have really been open to dating M., or learned what a considerate, caring person he is.  (I like to think I make him happy too lol!)

M. takes care of the day to day burden of making sure I sleep enough, eat enough, take my medication, and go to class PLUS dealing with all the animal drama.  I'm lucky he is a farm boy, and no stranger to hard work! Heck, I'm just lucky to have him. 

I think where my Lyme brain is going with this is to highlight that recovery is not a stagnant process.  Like raising a village, recovery from this disease is a group fight.  I look at my family around me and see that instead of breaking us apart, Lymes has made me appreciate them so much more. 

alyson1derland: A Girl Without A Pony Is Like A Tick Without Borrelia Bergdorferi

All of my life, horses have been magical to me. At a very young age, I started begging my parents for a pony. Sadly, sticking a pony in our tiny backyard (within the city limits) wasn't doable, or legal for that matter, but my poor broken heart couldn't fathom why my parents would choose to torture me by denying me my heart's desire of having my very own pony.

When I was in my mid-twenties, I finally got my foot in the door (er, gate) to the world of horses. I convinced my husband to let me take (very expensive!) riding lessons. Once a week, for one hour, my lifelong dream of being atop a real live horse came true!

I quickly noticed that something peculiar would happen when I was on the horses. When I was riding, if I was sick, my symptoms would disappear. But the second I would step back onto the ground, whatever symptoms I had would come back. For instance, if I had a headache it would be gone while I rode, but when my boots swung out of the stirrups and I landed back on the ground, my headache would be instantly back.

This happened to me many times. Be it a cold, asthma, anxiety, you name it and it would disappear. These magical ponies that I dreamed of all of my life were performing their own magic trick for me. In return, I did the one thing I could think of to thank them: I paid them back in peppermints.

On a cold and rainy winter day, my lifelong dream came true, and I got my very own dream pony. I loved my dear Shiloh for 5 wonderful years before she passed away at the ripe old age of 30. She carried me through so many things: my spouse in law school, the birth of my second child (okay, so she didn't actually CARRY me through that!), depression, anxiety, etc. Just like the horses I took riding lessons on, my problems melted away atop my swaybacked Appaloosa.

I have been well enough to ride horses only a handful of times since I got sick, but something about the magic of the horses shifted since I developed Lyme Disease. They were no longer able to carry me away from my pain. My joints still ached. My anxiety was still there. I was still depressed about being chronically ill. After years of horses taking my pain away from me, what was going on?

With this illness, I have had to tap into incredible amounts of strength deep inside of me to make it through my pain. Maybe the horses began to sense a change in me. Inside, I am so much stronger now than I ever was when I was "healthy." I am a much more positive person. I try not to take life for granted so much. I think the horses understood that I was finally ready to carry myself, ironically at a time when I could barely walk on my own two feet.

The reality of my illness is that I am not able to take care of another horse anytime soon. But the dream of one day owning my own horse once again carries me through my hard times. I KNOW I will be well again. I will fight with every last ounce I have to accomplish this dream. And this time, I will be stronger. I will not need my horse to carry me away from anything. We will ride off on our new adventure, girl and horse.

I am fighting for you, Dream Pony!

PS I will still be putting "a pony" on my Christmas list this year, just in case...

alyson1derland: Lyme Disease or Pajama Party? You Be the Judge!

Lyme Disease may not be a walk in the park. However, if you look very carefully (and some days you have to look VERY carefully), there are actually a few perks of having your body invaded by a boatload of bizarre creatures known as spirochetes. For example, due to the fact that I have crippling memory loss, you can tell me your good news over and over again, and I will get just as excited for you each time you tell me! My friends love testing this theory on me. Go ahead, try it!

Another perk of Lyme Disease for me is that, since I'm on a dreadfully restricted diet (gluten free and dairy free), I get to eat like a teenage boy in order to keep my weight up. I have breakfast, second breakfast, lunch, second lunch, you get the picture! Hands down, second breakfast is my favorite meal of the day. And thanks to Lyme Disease, I still get to keep my svelte figure!

One more bonus of Borrelia Berdorferi (aka my old pal, Lyme Disease) is that since I got sick, I got a written prescription to have a pajama party all day long, every day! I have quite the extensive collection of pj's. I have pajamas with Santas, apples, gnomes, Christmas trees, pumpkins, etc. Some people take great pride in picking out their outfit for the day (yawn!); I get to choose from a pile of fun and happy pajamas. Who says Lyme Disease doesn't have it's benefits?!

Lyme Beast: Highs and Lows

Right now I feel as if I could jump out of my skin.  The A-Team girl just wrote a fabulous explanation of what it is like to swing up and down in Lymes disease.  I can't express how many people have told me, "Well, you really don't look that sick!!" 

My response?  You are seeing me on a great day. 

Now that I am back in school, I have to drag myself out of the house even if I don't feel well.  And that takes a toll on the seemingly-ok person in the mirror.  Wednesday of last week was an absolute Herx, with me literally sleeping all day long.  I had to call my doctor to ask for a note to excuse me from required activities.

Due to lack of testing accomodations and the physical results of extremely high stress, I failed my first class.  Technically I am supposed to go to every class.  However, my body will not let me.  It is a case of damned if you do and damned if you don't, because if I go to class all day every day, then I will not have the strength to study at night, and my daylight hours will have been wasted.  If I come to required classes and labs only, then I am doing my best to conserve my strength and have some energy to expend on studying.  It is really a rock and a hard place. 

Anyway, I will be testing for almost seven hours tomorrow.  I get five hours for the written and about two for the practical.  So send me good thoughts, as I have done a LOT to prep for this bad boy!!  :) I actually am feeling good about going in and showing off what I know.  Amazing!!!

alyson1derland: The Carousel Disease

If you've ever spent any time around someone with Lyme Disease, you are probably pretty baffled. How is it that one minute they can be too sick to walk, and the next minute they are running around like a wild person, full of energy? One minute, they need to be carried up the steps, and the next minute, they are bouncing down the steps to answer the door. One day they can make a four-course meal, and the next day, they walk away from the stove until the smoke alarm goes off, reminding them that they were actually in the middle of making dinner!

Migrating symptoms are a hallmark of Lyme Disease. Sometimes I refer to it as the Carousel Disease, because my days are constantly up and down. No one has been able to explain to me what causes these ever-changing symptoms, but it is one of the most frustrating parts of the disease. People who don't understand Lyme Disease assume you are faking your illness. It's very hard for people to understand why I have days when I can actually ride a horse, and other days when I have to be carried from my bed to the bathroom.

You may look at me, and I may not look the slightest bit sick to you. But inside my body, there is so much going on that you can't see! So for those of you who are ready, hop on the carousel of Lyme Disease for a spin with me!

Imagine someone has strapped lead weights on your legs. Now your legs are heavy, achy, and hard to move. Getting around is quite a chore, but you can do it!

Now, imagine your brain is filled with cotton (hard to picture, but bear with me!). The simplest of decisions are now a major struggle for you, and you can't remember what you were saying or thinking. You can no longer answer a simple question like "should I have a snack?" You can no longer figure out simple math questions like 12-5. You constantly forget to eat your snack, and drink the tea you just made. You forget simple words. You haven't the faintest idea of what you did this morning, let alone yesterday!

Now picture someone taking a drill and boring into your hips, causing a deep, slow ache. It hurts when you walk, it hurts when you sit, it hurts when you lay down. Your fingers feel like someone is stabbing them with needles. Your knees feel like someone is banging on them with a hammer.

Mentally, you are very agitated, like someone is scraping their fingers down a chalkboard close to your ears. You head is throbbing, you are tense, and you feel as though you are ready to blow at any moment!

And just as suddenly as you hopped on the carousel, you hop off. The ride is over. Your head stopped throbbing. Your hips are only a dull ache now, not nearly as intense. You can walk easier now, but all that riding on the carousel has left you a little dizzy. Whoever was scraping their fingers down the chalkboard, has stopped, and now you're only mildly agitated. You don't feel like there are lead weights on your legs anymore, but you are left with a flu-like ache in your body. You suddenly remember a million things that you were supposed to do. Like a kitten running through the house, you dart around trying to make up for lost time, all the while wondering when the carousel ride is going to start back up. It might be soon. It might not be until tomorrow. You don't know what the ride will be like next time or how long it will last. But for now, you are happy that your quarter ran out, and the ride is over.

alyson1derland: My Lyme Disease Story

My journey with Lyme Disease


In October of 2009, I started developing mysterious symptoms. First came odd visual problems and trouble reading. It felt like there was constantly a fog on my glasses that I couldn't seem to wipe off. This persisted off and on for several months and I began getting headaches.

In late January of this year, I developed a sinus infection that wouldn't go away. I went to the doctor and got put on antibiotics. That's when all hell broke loose!

I became totally bedridden for months. The doctor said I had mono, but it quickly became apparent to me that something else was going on. I developed HORRIBLE burning and stabbing muscle pain that started in my ankles and over the weeks worked its way up my legs (there are just no words to describe the amount of pain I was in at that point!!). I started getting really nervous, thinking that whatever it was, was making its way up my body and about to attack my organs next! I was having panic attacks left and right. My pain was so bad, I literally wanted to die.

My doctor gave me Darvocet, but it didn't touch the amount of pain I was in. I called his office on numerous occasions crying and begging for something to help me with my pain. I have a very high tolerance to pain, but I was crawling across the ceiling in agony! He said to try Aleve for the pain. Darvocet didn't touch my pain, and this doctor thought Aleve would help?!

He did do something that helped, though. He put me on two antidepressants, Zoloft and Trazadone. He said that Trazadone is used for chronic pain, and when used together with Zoloft, they start working in a week or two (instead of a month or two). It did help, and since I've been on it, I no longer get the terrible shooting pains up and down my legs that were unbearable.

I kept developing more and more symptoms, but my tests kept coming back normal. I switched doctors so many times, desperate for help, but no one seemed to believe that there was anything wrong. I kept hearing that it was all in my head and that I should see a psychiatrist. I couldn't take care of my kids anymore. I could barely walk and many times I had to be carried up the steps. I developed joint pain and arthritis in my hands. And then there was the pain. Undescribable pain!

At one point, I was sent to a rheumatologist, who upon examining my fingers which were starting to curve and bend from arthritis and were too swollen for me to wear my wedding ring told me, "Sometimes when we don't feel well, we notice things about our bodies that we wouldn't normally notice." Was this person REALLY implying that I was making up joint pain and swelling?! She said all my blood work was normal and there was nothing wrong with me and our appointment was done.

I knew someone with Lyme Disease, and some of her symptoms were very similar to mine, so I started researching it and I realized that I had an incredible number of symptoms. I found a great doctor, known among Lyme patients as an LLMD (Lyme literate doctor). She tested me and I came back highly positive for Lyme Disease.

I've had symptoms of Lyme for years, and misdiagnosis after misdiagnosis. Lyme is so hard to diagnose because the symptoms are ever-changing. What hurts one day doesn't necessarily hurt the next day. Also, no two cases of Lyme Disease are the same. You can get any and all combination of symptoms.

I started long-term antibiotic treatment in August. I don't know how long it will take before I am well again. For some people, particularly those who've been shuffled from doctor to doctor before getting the correct diagnosis, it can take many years. I have good days and bad days. I am very limited in what I can do, and I am in a lot of pain on a daily basis.

I don't want people to think I'm writing this for sympathy or pity. I write it because people don't know the facts about Lyme Disease. Did you know that fewer than 50% of people ever recall a tick bite? Fewer than 50% get the telltale bull's-eye rash associated with Lyme Disease. Did you know that a tick can be the size of the period at the end of this sentence? If you went to your doctor and asked to be tested for Lyme Disease, most likely you would be told that Lyme Disease doesn't exist here. I am living proof that this isn't true!

I hope my story inspires you to take the time to learn the facts about Lyme Disease. It is supposedly "rare" in my area. But I'll let you in on a secret: I'm not the only one here with Lyme Disease! Not even close. There are lots of us, here, there, and everywhere!

For a list of symptoms, please visit this site: www.canlyme.com/patsymptoms.html

Lyme Beast: Weekend Layout

With the two letter grade jump (can you tell I'm excited??) due to testing accomodations, I am starting to get psyched about Monday.  One caveat: Monday will be 7 hours of testing.  Yes.  7 hours.  Therefore, I will need a lot of coffee and lots of little things to nibble on and egads of scratch paper.  And plenty of extra pencil lead. 

But anyway, I digress.  Here is the weekend's plans:

Friday
wrap up all objectives
finalize formatting of objectives
print and organize objectives into binders
decide on bicillin shot tonight or on Saturday...

Saturday
review objectives
make summary ppt of all pictures from histo
make summary ppt of all guide ppts
do some horse grooming :)
Halloween hay ride

Sunday
meet momma
review, review, review
at least one load of laundry
pack food for Monday's test-a-thon
sleep!

Monday
kick butt and take names :)

Lyme Beast: Success...in ways.

Success, as most of us with Lyme know, is sometimes one step forward and then three steps right.  And maybe a wiggle back. 

But I have one excellent success to report.  Tuesday's exam came in two letter grades higher than the previous one.  I credit this to testing accomodations, as my brain still works, but it works slowly. 

After the long day of testing, I came home and rode the Big Mare.  She was rather obnoxious, as she is big and spoiled and convinced she is the Queen.  However, her big obnoxious antics did not even bother me.  This ruffled her feathers quite a bit, as she is used to me getting tired and thereby getting her way if she keeps fussing.  This time, she found that I could flex her nose to my boot if she was going to attempt to spin and rear!  :) So success. 

However, after that day I flared rather nastily. I didn't get any hw done Tuesday, and Wednesday was a total mess as I came home early and crawled under the blankets to sleep.  Today I called my doctor for a note to excuse my absence from school, as I wasn't going to risk staying flared because I wanted to tough it out. 

Monday is a monster exam.  Monster.  So it is very important that I get rested and studied to the max for it. 

But in terms of things accomplished?  I scored.  :)

Lyme Beast: October 26 Double Whammy

Today, October 26, is a double whammy of Lyme fun. 
First off is an 8 am written.
Second is the practical...and I'm lucky to have mine at 1:28 pm.  Hurrah!

This is my first exam with testing accomodations (for those of you who are also in school, doing a full neuropsychiatric evaluation to determine exactly how the Lyme Beast has affected your mental capability is a good thing.  The letter from my specialist was supporting evidence, but not enough on  its own.).  Hurrah for that. 

This is also the first time I have plotted my sleep schedule to ensure peak performance at the testing time.  We will see how that plays out with the results of the exam.  A good thing is that the tests are too far apart, but are far enough apart to allow some R&R (aka more studying) in between.

Tonight will be:
dropping off a letter
grabbing some frozen berries and bananas for the am protein shakes
prepping for a quiz on blood and muscle
working on objectives
getting some sleep

I would like to:
make a list of supplements
make a list of medications
laminated, for carrying around with me.  It is a pain not to be able to tell someone what you are on because there is so much of it.

Lyme Beast

Purpose: To chronicle coping with the Lyme Beast in my life.
Added fun is whatever else I encounter in the process.